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  • #16
    I had neuropathy stuff going on during chemo (and post, during recovery). It wasn't as bad as some people on here, a "slight" tingling in my right hand and feet. My feet, I'd describe the feeling like I'd been walking for a few hours and then sat down and taken my shoes off. Over time (and now its almost 5 years) the tingling has reduced, but it's still there - my finger tips (literally the ends) are very sensitive, and I get numb/"bloodless" fingers every once in a while, especially during the colder months, but also from some types of vibration.

    My oncologist told me that the neuropathy would settle down over the first few months, and basically whatever you (still) have 6 - 12 months out, is what you will always have.

    DZ

    Jan 2009: RHS (Seminoma) & RT
    Mar 2010: LHS (Embryonal Carcinoma)
    Sep 2010: Relapse & 3 x BEP
    Mar 2015: Five years "nut free"
    http://doublezeroami.blogspot.com

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    • #17
      Neuropathty is something many of us have to deal with post chemo. It is an unfortunate side effect of getting cured. For some it goes away with time, for others, you just learn to deal with it after a while. I am in group #2. Let him know that while the effects may not go away, they get way less annoying after awhile.

      Dave
      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP

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      • #18
        Agreed (with Dave). This (for me) is the same with tinnitus. I "suffer" both, but these days I hardly notice either.

        Jan 2009: RHS (Seminoma) & RT
        Mar 2010: LHS (Embryonal Carcinoma)
        Sep 2010: Relapse & 3 x BEP
        Mar 2015: Five years "nut free"
        http://doublezeroami.blogspot.com

        Comment


        • #19
          I had read that before Is it in most cases that the neuropathy stays? Or in all cases? Dereks seems to still be getting worse as opposed to better. When I say worse, not drastically worse or anything, but more pronounced I guess.

          The nausea and vomiting is still happening. He feels best in the morning and gradually feels more nauseas as the day goes on. Usually in the evening he will vomit once or twice. We are hoping that this will fade soon. Good thing is that he is not dehydrated or losing a bunch of weight. He is eating and drinking pretty well.

          Derek has never drank or smoked in his life, but this week we invested in some of those, non THC marijuana tablets, as the other nausea meds don't seem to help. It doesn't really seem to have had much of an effect. Looks like we will just have to wait this out.

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          • #20
            Impossible to predict what will happen with his nueropathy, some say theirs has gone away. I agree with doublezero that it's similar to dealing with tinnitus. It's a;ways there but you simple stop noticing it most of the time.
            He should not be nauseous anymore, & I would pester the doc about that.

            Dave
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

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            • #21
              I gave the docs a call about it this morning and told them everything thats been going on and how long it is going on. Derek woke up nauseas this morning so it really isn't budging at all. They said they would give us a call back soon so I am just waiting for that now.

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              • #22
                They are not worried as he is not dehydrated or losing weight. They said to just keep doing what we are doing, take the anti-nausea meds and wait it out. They said that they don't know how long this should last.

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                • #23
                  My nausea hung around for 2-3 weeks post chemo. As long as he is eating and staying hydrated I would not worry too much.It was a steady and gradual decline. I do agree that it should be stopping real soon. I found that the more I ate the better I felt....seems when my stomach went empty I didn't feel so good...kinda like I had to overcome the fear of eating and drinking made me sick during chemo.

                  I was born with a hearing loss and had tinnitus all my life. My hearing took a hit from the chemo and the tinnitus was amplified during chemo. The tinnitus returned to my normal state over 3-4 months. But again, I've been used to it before so it may not have been so dramatic for me.

                  As for the Neuropathy....I can honestly say that that has been my most annoying long term side effect. It has not gone away at all. But I have had times when it was absent for a one to three days, but it always comes back. I talked to a ten year survivor who told me that his finally went away (mostly) around year 7. So I have resigned myself to just living with it and hopefully can get to the point of ignoring it.

                  I am one year out from completing chemo and only in the last 6 weeks can I say I am finally back to 100% of normal. Minus the treatment induced stuff.

                  - Matt
                  March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
                  March 13th: Left IO 100% Classic Seminoma
                  6.3 x 5.1 x 3.8 cm, no invasion of anything
                  LDH never fully normalized
                  Stage: IS
                  Watchful Waiting
                  May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
                  May 12th: started 3xBEP
                  Neupogen during Cycle 2 and 3
                  July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
                  August 4th: Post Chemo CT/PET scan
                  September 4th: Port removed
                  July 8th 2017: 3 YEARS ALL CLEAR !

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                  • #24
                    Originally posted by JeskiM69 View Post
                    ... I am one year out from completing chemo and only in the last 6 weeks can I say I am finally back to 100% of normal...
                    (Very thankfully) It is now a "long time ago" for me, but I'd say it took me a good 6+ months before I was feeling 100% again. That said, since then I have maintained that 100% feeling. I remember my onc' suggesting that I'd never be as good as I was before (the additional stress of chemo etc), and that is true - the side effects are there and not "normal". However, I am as fit/healthy now (at 47) as I was before this adventure started - everything (bodily and mentally) works now the same/better than before, and for that I am very grateful (understatement).

                    So Nell, hang in there with your man. It will get better and will get back to normal...
                    DZ

                    Jan 2009: RHS (Seminoma) & RT
                    Mar 2010: LHS (Embryonal Carcinoma)
                    Sep 2010: Relapse & 3 x BEP
                    Mar 2015: Five years "nut free"
                    http://doublezeroami.blogspot.com

                    Comment


                    • #25
                      Yes. He will get there.

                      Just as each us has our own unique experiences during chemo; we each have our own unique experience during the recovery.

                      While my physical recovery was rather fast. I lagged in the mental area. First it was fear and anxiety. I worked my way through that (took 7 months or so). The final thing that did it for me was that I had to undertakes another drastic life change. Kind of a "reset" that I knew I needed....I changed employers and also my job duties, responsibilities, etc. That was something that was ongoing before my cancer adventure and so making that change was (for me) the final healing step...It got me over my final mental/social/identity/life hurdle.

                      Now the only "abnormal" aspect of my life is that at a relatively young age (40), I count an Oncologist and Urologist as the doctors in my life and frequent checkups/scans (every 3 months for the next year. Other than that, yes, I am back to normal.

                      He will get there. His body and mind just took a tremendous beating. Stand by his side like you are and this time next year you'll be amazed at how far you came. You are still very early off of the chemo drip so continue working with the docs to do whatever it takes to make the rebound.

                      - Matt
                      March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
                      March 13th: Left IO 100% Classic Seminoma
                      6.3 x 5.1 x 3.8 cm, no invasion of anything
                      LDH never fully normalized
                      Stage: IS
                      Watchful Waiting
                      May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
                      May 12th: started 3xBEP
                      Neupogen during Cycle 2 and 3
                      July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
                      August 4th: Post Chemo CT/PET scan
                      September 4th: Port removed
                      July 8th 2017: 3 YEARS ALL CLEAR !

                      Comment


                      • #26
                        Nelly. I am so sorry to hear that. The same thing happened to me when I was taking care of my mom when she was going through breast cancer/chemo treatments. She was in the bathroom and passed out on me. My heart stopped. She hit her head really hard on the bath tub and I thought she died. I was shocked and extremely terrified. In my situation, she was just extremely dehydrated. I have nothing to say except that I completely understand because I have been there. I hope things get better for you like they did me.

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